Debunking 7 Common Ostomy Myths
Learning that you need an ostomy can be frightening news. It may bring up questions and concerns about how your life will change.
Ostomates – people who have an ostomy – make up a very small percentage of the population, so even among ostomates, so it’s natural that misconceptions arise.
But it's important not to confuse common ostomy myths with the facts — take it from someone who's been an ostomate for 5 years.
Myth 1: Ostomies are embarrassing
Most people are uncomfortable talking about bodily functions. That’s okay. I can attest that having my bowel habits as the topic of every medical conversation was challenging.
A great way to feel more confident and comfortable with an ostomy is to join a support group, either in person or online.
By doing so, you will soon find that you are not alone. and that you share the same concerns and experiences with other members.
Myth 2: Everybody will know I have an ostomy
The vast majority of people you meet will not know you have an ostomy just by looking at you.
Over the years, ostomy pouch profiles (meaning how flat a system sits against your body when seen from the front or side) have become hard to detect.
For example, if I wear high-waisted leggings, you can’t tell I’m wearing an ostomy bag. The only way most people will know if you have an ostomy is if you choose to tell them.
Myth 3: I can’t leave the house with my ostomy
In addition to being a life-saving procedure, one of the best outcomes of ostomy surgery is to ensure you can leave the house.
My first trips after ostomy surgery were baby steps. I went to get gas or a few groceries at the store, then came directly home. I did this because I was learning the ins and outs of my ostomy output, I didn’t want to be caught out if I had a problem. Now I have more confidence and I am out of the house all the time.
Regardless of the length of my trip, whether it's errands or a day-long excursion, I travel with extra ostomy supplies. I keep a single bag change with minimal supporting supplies in my handbag. I also keep a slightly larger kit and a change of clothes in my car at all times.
I recommend making yourself an ostomy travel kit. Your needs might vary from mine, so experiment with what you pack in your kit.
What to carry with you
In your day pack or handbag:
- Skin barriers (1-2)
- Bags (1-2)
- Travel wipes
- Small garbage bags (2)
In your car:
- Change of clothes
- Skin barriers (3-4)
- Bags (3-4)
- Barrier spray or wipe
- Adhesive remover
- Travel wipes
- Small garbage bags
Speaking of traveling, let’s talk about myth four.
Myth 4: I can’t travel with my ostomy
Yes, you can! People travel all the time and all over the world with their ostomies. I’ve been sightseeing in Europe and camping through America with my ostomy.
Traveling with an ostomy has taught me to become more comfortable dealing with the unfortunate but inevitable “oops!” moment. I’ve done emergency bag changes on airplanes and airports, at rest stops on the road, and even in restaurants.
1. Keep it simple
Sometimes you need an emergency change. When conditions aren’t optimal, I do a bare-bones, get-me-through-it change until I reach a hotel or home. Skip steps, like adhesive removers and skin barriers, which take time to dry.
2. In a pinch, use the trunk of your car to do a bag change
It has a wide, flat surface to lay supplies on.
3. Carry a roll of doggy waste bags
If there’s not a toilet convenient, you can empty your pouch into one and dispose of it in a garbage can.
4. Do a fresh change a day or two before your trip
This gives the barrier adhesive time to set. I’ve noticed that attempting physical activity that requires a lot of movement, bending, and stretching (such as traversing an airport, exercise, or housework) in the first hours after a bag change means my barrier is more likely to fail right away.
Air Travel Tips
One question I had about my ostomy was what would happen to it on an airplane? I imagined my bag inflating like a balloon. The answer is that because the air on the plane is pressurized, nothing happens to the bag.
Before a plan trip:
1. Pack two sets of your supplies
Put one in your carry on and the other in your checked luggage.
2. Let the security agent know you have an ostomy
Sometimes you might have an extra screening. Security has seen it all before so you should be on your way fairly quickly.
3. Avoid fizzy drinks or eat gas-producing foods prior to travel
You’ll be sitting for long periods of time and a belly or bag full of gas can be very uncomfortable.
4. Pack your own foods if possible
Airports have a limited selection of foods and often they’re not very healthy. If you’re on a special diet, you’ll be way more comfortable eating food you know will agree with you.
Myth 5: I can’t go swimming or have a bath with an ostomy
Bathing or swimming with an ostomy isn’t complicated. Ostomy barriers and bags are designed to keep your output in and everything else out.
They’re also designed to withstand a variety of activities, including swimming and bathing. In my case, I simply put a sticker over the air filter on my ostomy bag to prevent water from entering, then I’m ready to go.
Swimming and bathing tips
You have options to ensure your comfort and security during these activities.
- If you have a colostomy bag (which is slightly different from an ileostomy and urostomy), you can use a stoma cap instead of a bag to reduce bulk under their swimsuit.
- If you’re worried about your bag creating a bulge or being visible under your suit, use a waterproof ostomy wrap that will keep it in place — these work especially well for swim shorts.
- The same shape retention material that keeps your suit in place is also really good at supporting the bag and minimizing bag outlines.
- After water immersion, check the barrier edges. Water can reduce the effectiveness of a barrier's adhesion, causing it to loosen.
And here’s some good news: you don’t have to hide your bag at all. Lots of ostomates are choosing suits based on how happy it makes them, not on how well it hides a stoma bag.
Feel free to dust off your two-piece suit or boardshorts and rock on out to the water.
Myth 6: I can’t exercise how I want to or how I used to
While it’s true that you can’t jump back into powerlifting or marathoning right after your surgery, with time and healing, you should be able to get back to your favorite fitness activity — even running marathons.
There are many ostomates out there who are accomplished athletes. Personally, I’m in much better shape than I was before my ostomy surgery. My biggest motivation to stay fit comes from protecting my ostomy. My quality of life improved drastically after my surgery and I want to enjoy it for a long time to come.
1. Consult with your doctor about potential restrictions
You might have limitations post-surgery, such as how much weight you can safely lift. In the beginning, I was limited to no more than 10 pounds. Once I got clearance from my doctors that it was safe to lift more weight, I slowly increased the amount.
2. Don’t do too much, too soon
It’s tempting to try to quickly return to your pre-surgery activities, especially if you're feeling good. If you overdo it, though, you could risk injury and a return to the hospital.
3. Support and protect your ostomy
Wearing an ostomy wrap or support garment, such as high-waist leggings, will make exercising much more comfortable.
4. Exercise as tolerated
While it’s important to challenge yourself to progress your fitness level, if something doesn’t feel right — stop. Listen to your body and you're more likely to avoid injury.
For a full run-down on exercising with an ostomy, read our tips on exercising with an ostomy.
Myth 7: I can’t eat my favorite foods
Typically, ostomates are recommended a low residue or low fiber diet after their surgeries. That’s because high-fiber foods, red meats, and gas-producing foods are harder to digest and can cause a lot of discomfort. They can also lead to blockages in your intestines, which require immediate medical attention.
But don’t despair. It’s likely you will still be able to eat your favorite foods if you take precautions. I’ve been able to bring spice and vegetables (and spicy vegetables!) back into my diet. If your medical provider has given you restrictions on your diet, please follow those.
How to reintroduce your favorite foods:
1. Start small
Try a small serving of your dish. Pay attention to how it makes you feel and how it affects your output.
2. Start simple
Try one food or dish at a time. A three-course meal will put a lot of stress on your digestive system, especially if you’ve been eating a soft or bland diet.
3. Go slow
Add back flavor and spices slowly. Do not attempt to eat Uncle Harry’s 5-Alarm Chili right away. Learn from my mistakes – it won’t end well.
4. Cook it well
Cooking breaks down fibers in food and makes it more digestible.
Facts, not myths
Life with an ostomy doesn’t have to be limiting. Most ostomates are able to do all the things they did before. If you’re worried about life with an ostomy, we’re here to help.
Better Health has a great selection of ostomy products and experts who can guide you in selecting the right supplies for your lifestyle. We can also answer your questions about insurance, orders, and payments.
Give us a call at 415-475-8444 or click the chat box on this page.